Navigating Insurance & Healthcare
as a Young Adult

Frequently Asked Questions

Transitioning off a parent’s insurance plan can be a lot to navigate, especially while managing a rare condition like HAE. That’s why the HAEA put together this resource to help answer common questions and make the process a little easier. From understanding your coverage options to knowing what questions to ask, we’re here to support you every step of the way.

Choosing an Insurance Plan

What happens when I age out of my parent’s plan?

The Affordable Care Act allows young adults to remain on their parent’s insurance plan until they “age out” and are no longer eligible for this coverage at 26. Prior to turning 26, you can continue to receive coverage regardless of if you’re married, no longer a student, or have insurance offered through an employer. However, once you turn 26 years old, you are no longer eligible to be covered under a parent’s insurance plan (with some exceptions). In the sections below, we will outline options that are available to you during this transition.

Exceptions: There are exceptions to “aging out” for adult children with disabilities unable to support themselves due to a physical or mental disability.

What are the different types of health insurance?

Health insurance generally falls under two categories:

Private or Commercial insurance: Includes individually purchased employer-sponsored plans and plans from the Affordable Care Act’s Health Insurance Marketplace.
Public insurance: Provided by the US federal government and or at an individual state level. This includes Medicaid (income-based) and Medicare.

Understanding these options will help you determine what’s available to you based on your income, employment status, and health needs. Employers and universities typically offer insurance, but you are not required to accept these options, and can enroll in a plan that meets your needs.

How do I enroll in a health insurance plan?

There are typically two ways you can enroll in a health insurance plan:

Open Enrollment: During this time, you can elect to switch your health insurance coverage. The time frame for open enrollment varies depending on if you’re insured through your employer, school, or an Affordable Care Act plan, so it is important to check your plan’s deadlines. Open enrollment typically happens in early fall and each year when you can elect to switch your health insurance coverage.
Special Enrollment Period: This allows you to sign up outside of the usual time frame due to a qualifying event - like aging out of a parent’s plan, changing jobs, getting married, etc. You can learn more about qualifying life events at Healthcare.gov. The government has different deadlines for special enrollment periods, which can be found at Healthcare.gov. It’s critical to understand these deadlines so you don’t end up without coverage.

If you’re transitioning to employer-sponsored coverage, your HR department can be a valuable resource. Be sure to contact them well in advance of your 26th birthday to explore the options available to you.

Tip! Set a calendar reminder for when your special enrollment period will begin and end - depending on the plan you choose, this could be 30 or 60 days after your 26th birthday

What should I consider when selecting a health insurance plan?

An important thing to remember during this process is that you always have options. If the insurance offered through your employer or university doesn’t suit your needs, you can get insurance through the Health Insurance Marketplace, created as part of the Affordable Care Act. If you’re in a union or your employer pays a portion of your insurance premium, there may be some restrictions, so having a discussion with your HR representative can be another good place to start.

Health insurance plans vary in cost and coverage. When selecting a plan, use their Summary of Benefits & Coverage to consider:

Premiums (monthly cost) vs. deductibles (amount you pay before insurance kicks in)
Copays & coinsurance (your share of the cost for visits and medications)
Out-of-pocket maximums (the most you’ll have to pay in a year)
Network restrictions (whether your doctors are considered in-network or out-of-network and if your HAE treatments are included on the insurance plan’s formulary)

The HAEA can be a resource to help analyze plans - reach out to an HAEA Health Team Member at health@haea.org or call 866.798.5598 for any questions or help navigating the insurance transition process.

Tip: Checking to make sure your doctor is in-network can help you avoid unexpected costs. While the in-network or out-of-network status of a provider can change during a calendar year, you can always call health insurance companies to check the current status of your care team. Many health insurance companies also have online tools to check if a provider is in-network.

Script for Phone Call to Insurer: “Hi, I’m offered your insurance as an option through my employer/university and before I make the switch, I just want to confirm whether the doctor I’m currently seeing is in-network. Can I give you their name and have you check for me please? Thank you.”

Ensuring Access to my HAE Treatment

How Do I Manage My HAE Care Within My Insurance Plan?

All HAE medicines require prior authorizations, meaning that your insurer must approve them before covering the cost. Any time changes are made to your insurance plan, contact your HAE physician to ask them to begin the prior authorization process. Some plans also require a referral from your primary doctor before you see a specialist - this is usually outlined in the Summary of Benefits & Coverage.

Tip: Create a calendar reminder to call your insurance and check on the status of your prior authorization. This can help ensure it keeps moving.

What are the key steps in getting or continuing my access to treatment?

Specialty Pharmacy Refills

HAE medications are filled by specialty pharmacies, which may have specific refill rules or approval timelines. It can be helpful to set reminders or calendar alerts for any refill dates or prescription expirations. Work with your doctor and insurance to avoid lapses in access.

* Even if you’ve used the specialty pharmacy before, be sure to let them know about your new insurance and confirm that your old insurance has been removed from your account.

Tip: Create a calendar reminder to call your insurance and check on the status of your prior authorization. This can help ensure it keeps moving.

After obtaining your new insurance and placing your first order with the specialty pharmacy, make sure coverage is in place and all prior charges have been settled to avoid any billing surprises.

Insurance Denials

If your insurer denies coverage for a prescribed medication, you can appeal the decision. This often involves submitting additional medical documentation and working with your doctor to justify the treatment. In preparing for the appeal, it can be helpful to:

Understand why the denial happened – Review the Explanation of Benefits (EOB) and request a formal reason in writing from your insurance.
Gather supporting documentation – Work with your doctor to submit documentation such as medical records, a letter of medical necessity, the HAEA Medical Advisory Board treatment guidelines, and past treatment history.
Follow the appeal process – Most insurers allow multiple appeal levels, so persistence is key. There may be deadlines, so it’s important to act quickly and communicate with your doctor. There’s also an option to submit a ‘personal appeal’ alongside your doctor’s to tell your side of the story and explain why the medicine is important to you.
Keep in mind, you should notify the manufacturer patient support team that makes your medication to discuss options for accessing therapy during the appeal process.
The HAEA health team is ready and available to assist with insurance appeals and denials.

Avoid Disruptions in Care

Setting reminders or calendar app alerts can help you stay ahead of any potential coverage gaps or delays. Make sure to note prior authorization renewals, prescription expiries, prescription refills, and doctor visits. For prior authorization renewals or prescription expiry dates, it can be helpful to reach out to your doctor a few weeks in advance, so there isn’t a lapse in care.

How Do I Advocate for My Health and Navigate Insurance Issues?

Insurance might feel complex, but advocating for yourself and using available resources can help you understand the process and make a huge difference in accessing the care you need.
Maintaining a clear list of key contacts can help you resolve issues or delays quickly. Make sure you have updated contact information for:

Your specialty pharmacy – for medication refills, prior authorizations, and delivery questions
Your doctor’s office – for submitting medical documentation and appeal letters
Your insurance company’s member services – for coverage questions, claim issues, and prior authorization status
A case manager (if available) – some insurers provide dedicated case managers to assist with complex conditions like HAE. This person can help you advocate for care & coordinate between the insurance, specialty pharmacy, and doctor’s office.
The HAEA can help when navigating insurance challenges and finding financial assistance
Your drug manufacturer may offer a patient support service through their HUB to provide benefits analysis as well as options for access to medications.

How can I get financial assistance for my treatment?

There are resources that help overcome any financial burdens associated with gaining access to your HAE medicine.

Patient assistance programs – Many pharmaceutical companies offer programs that reduce or fully cover medication costs for eligible patients.
Co-pay and premium assistance programs – Nonprofit organizations, like Accessia Health and The Assistance Fund (TAF)The Assistance Fund (TAF) may provide financial aid to help with out-of-pocket expenses.
State and federal resources – Medicaid, disability programs, and other assistance programs may offer additional support.

How Do I Keep Important Medical & Insurance Documents Accessible?

A proactive approach to managing your healthcare ensures you're prepared for changes in insurance, providers, or treatment needs.

Have copies of your insurance card, prior authorization approvals, prescriptions, and medical history in both digital and physical formats so you can quickly access them if needed. Keeping everything HAE related in one file or folder ensures you always know where to look & can make an appeals process much smoother. And make sure you document everything! Received a physical letter regarding a denial? Take a photo to add to your digital HAE folder.

Tip: Have a photo album on your phone with pictures/screenshots of your insurance card & a doctor’s letter explaining the HAE and your treatment.

Action Plan: Essential Tips for Staying on Top of Your Care

Taking an organized and proactive approach to your healthcare can save time, stress, and money. Use these practical steps to stay on top of your insurance and treatment needs.

Start the process early - as you approach your 26th birthday, begin the transition to a new insurance and make sure you have enough medicine on hand to cover any delays. Verify here but depending on your previous & future insurance, you move off of your old insurance and begin coverage with a new insurance plan up to 60 days before “aging out”.

Notify your doctor as soon as you transition to a new insurance and ask them to send your prescriptions and begin the prior authorization process.

Set calendar reminders for open enrollment, prior authorization renewals, prescription expirations, prescription refills, and doctor’s visits.

Keep digital and paper copies of your insurance card, approval letters, and medical records.

Establish a primary point of contact at your insurance company who understands your case. Sometimes insurance companies will assign you a case manager familiar with HAE.

Know where to find emergency care that accepts your insurance and is familiar with HAE.

Contact the HAEA with additional questions or concerns.

Glossary: Key Insurance & Healthcare Terms to Know

Insurance jargon can be confusing, but understanding key terms helps you navigate your plan with confidence. This glossary covers the most important concepts related to your care.

Insurance Plan Types

Health Maintenance Organization (HMO): These insurance plans offer lower premiums and out-of-pocket costs, but you must see an in-network primary care physician and will need referrals for specialists.

High Deductible Health Plan (HDHP): Insurance plans with lower premiums but higher deductibles, meaning you pay less monthly but more for each medical expense. You can open a Health Savings Account (HSA) to pay for medical expenses with before-tax dollars.

Preferred Provider Organization (PPO): Insurance plans with higher premiums but lower deductibles, meaning you pay more monthly but less for each medical expense. This can be cost-effective for patients with frequent doctor visits or expensive medications.

Costs & Payments

Claim: A request submitted by your healthcare provider to your insurance company for payment of healthcare visit or service.

Copayment (Copay): A fixed amount you pay for covered services at the time of care, often for doctor visits or prescriptions.

Coverage: The range of healthcare services and benefits your insurance plan provides.

Deductible: The amount you must pay out of pocket for covered medical expenses before your insurance begins to pay.

Out-of-Pocket Maximum: The maximum amount you must pay for covered medical expenses in a policy period; after this, your insurance pays 100% of covered costs.

Premium: The amount you pay for insurance coverage, typically monthly. If on an employer plan, this may be included in your benefits package.

Reimbursement: The repayment of expenses you paid out of pocket for medical treatments or services.

Healthcare Providers & Networks

In-(or Out-of)-Network: Refers to whether a doctor, hospital, or provider has an agreement with your insurance. In-network providers offer discounted rates.

Provider: A healthcare professional or facility that delivers medical services or supplies.

Specialty Pharmacy: A pharmacy that dispenses medications for complex or chronic conditions, often requiring special handling or storage.

Accounts & Financial Support

Financial Assistance Program: Programs from pharmaceutical companies, nonprofits, or government agencies to help cover healthcare costs, including medications, treatments, copays, or premiums.

Flexible Spending Account (FSA): An employer-offered account that allows you to set aside pre-tax money for health expenses like copays, prescriptions, and supplies.

Health Savings Account (HSA): A savings account for certain medical expenses, funded with pre-tax dollars, available only with high-deductible health plans.

Coverage Rules & Resources

Formulary: A list from your insurance plan detailing which prescription drugs are covered.

Pre-Existing Condition: A health issue you had before new insurance coverage began.

This resource has been developed in collaboration with HAEA member, Isabel B.

Navigating Insurance & Healthcare as a Young Adult